Things Will Only Get Better. But When?
By Cathy Jameson
I heard one of my favorite songs when I was grocery shopping on Thursday morning. Its lyrics ran through my head later that evening…
My youngest called out for me after she’d gotten herself in bed on Thursday night, “Mommy, aren’t you going to come tuck us in?”
Hesitating, I replied, “I’m sorry, honey. I can’t right now,”
“Why?” she asked.
“Ronan’s had some seizures. I can’t leave him yet,” I answered.
“Oh.”
I could tell that she was crushed. For a little kid, going to bed without a hug and a kiss can be devastating. I promised my daughter that I’d try to be there soon and added that if I wasn’t, she should go to sleep. I’d check on her later.
That didn’t go over well.
I turned my attention back to Ronan, but I heard a small voice at the doorway. “Mommy? Can you tuck us in here, in Ronan’s room?”
Offering a smile, I said, “Of course. Come here so I can give you a hug.”
She fell into my lap for a hug and kiss. Ronan’s other sister and his little brother weren’t too far behind. Eventually, Fiona, Ronan’s oldest sister also joined us. Taking turns to get a hug from me and to give Ronan a kiss goodnight, the siblings sat down on the floor next to Ronan’s bed.
“Mommy?” Izzy asked, “Is Ronan going to be okay?”
Trying to be positive, I answered, “I hope so, sweetie. He had a few small seizures before we said prayers, and he’s had some more since. I’m going to stay with him in case he needs me, or in case…things…get... In case things don’t go well. But don’t you worry…”
Interrupting me, Izzy said matter-of-factly, “Mom. I have to worry. He’s my brother,”
I turned away. I didn’t want her to see me cry.
“You’re an amazing kid, you know that, Izzy? All of you are,” I let them know. Scooting closer toward Ronan, Ronan’s siblings gathered around. I knew that trying to send the kids back to their rooms was not an option. They were not going to leave their brother’s side.
After assuring Ronan’s younger brother that we did not need to go to the emergency room, he took the first shift to keep Ronan happy. Willem read some of Ronan’s favorite pages from our stash of Dr. Seuss books as well as from Ronan’s new favorite story, The Very Hungry Caterpillar.
Next, it was Izzy’s turn.
Izzy offered to read a story but only after she made a statement.
“Mom, if you have to take him to the hospital, I’m going with you.”
I decided not to answer her. The siblings were not ready to hear no for an answer.
The kids took turns quietly reading or repeating Ronan’s favorite movie scenes to him and only took a break when we thought that Ronan was about to have another seizure. When those happened, they’d sit quietly, bow their head and say a quick prayer, and offer that they were more than ready to assist should I need any help. After those moments passed, and while waiting for things to get better, the kids and I quietly talked. We talked about seizures, autism, the emergency room and how hard this must be for Ronan. For being so young, they asked some really great questions.
Why isn’t Ronan getting better?
Mommy, why isn’t the medicine working?
Since it’s not working, why can’t we try something else? There’s got to be something else.
What happens if the seizures come back in the middle of the night?
Who are you bringing to the E.R. if you or Daddy have to bring Ronan there? (Each of them wanted me to promise that I’d pick them. They were adamant that he not go alone.)
Answering each question as honestly as I could, the kids continued to quietly talk and to hold Ronan’s hand and to reassure each other that things were going to be okay. Then, as quickly as they’d come on, there was a calm. The seizures had subsided. We could breathe easy. For now. For now, the siblings’ fear of uncontrollable seizures, of having to use emergency meds, of emergency rooms, and worse, of their brother dying, was over. I thanked the kids for their help and said it was time for bed.
This time, they did not protest.
One by one, the siblings departed. First my youngest. Then, Ronan’s little brother. Then, Izzy. And finally, Fiona. Grateful that Mommy did not have to use the emergency meds or need to take their brother to the E.R., the kids went back to their rooms and got into their beds. Ronan, already under his covers, was quieting down and getting ready to fall asleep. Before he did, though, one of the siblings came back. Izzy needed to see Ronan one more time.
Without saying a word, Izzy looked at me and then walked toward her brother. Giving Ronan one more kiss, she said, “I hope you feel better. Good night, Ronan. I love you.” With that, it was time for lights out.
That night, Ronan got almost a full night of sleep. With only one wake up in the middle of the night, he got up for the day around 8:30 am. Ronan was a bit slower than usual, but he woke up happy. The kids were happy, too. They greeted their brother as he walked into the kitchen on Friday morning.
Ronan!
Hey, buddy!
Good morning, Ronan.
Are you feeling better?
Once they’d said hello to Ronan, they turned to me. Speaking quietly so that Ronan could not hear their questions, they asked:
Mom, are you sure he’s okay?
No emergency meds, right?
No trip to the E.R. last night, right?
Will he have any seizures today?
I hugged the kids and answered their questions:
He’s okay.
No emergency meds.
No trip to the E.R. last night.
I really, really hope not.
Ronan was seizure free on Friday. The kids were excited and made sure to say thankful prayers for that when we gathered for bedtime prayers later that evening. As each one of Ronan’s siblings said their intentions, Ronan was at the top of the list…so that Ronan can communicate and talk with us…so that whatever needs to be healed in Ronan’s body is healed…so that he doesn’t hafta have seizures anymore…for Ronan to be able to talk and play with us.
The siblings pray daily for their brother. They pray unceasingly for his well-being. They pray for hope, for healing, and so that Ronan can experience everything they get to. They pray without fail and even when it’s been a tough day. They pray knowing that tomorrow could be an even tougher day, too. Somehow, they believe that things can get better and will only get better. I’m holding onto that because some days, like on Thursday when seizures plauged my little boy, it was anything but.
Cathy Jameson is a Contributing Editor for Age of Autism.
--
I don’t usually share specific treatments that we are using, but I will share that Ronan has used Hemp oil, is doing a sensory-based therapy program, and that he is on an anti-epileptic medication. If you have a link, a journal article, or an idea to suggest, or if you want to share a protocol that worked for you to reduce and/or eliminate seizures, please leave that information in a comment below. I promise to read every single one of them. xo, Cat
Benedetta,
Yes, that's the product I was trying to describe. I haven't heard of anyone doing enemas, but maybe they do. The directions say to give one teaspoon three times a day, preferably before meals. A large bottle, less than $70 should last two months. For some reason, animals need more. My ten pound dog has the same dose as me. The amount horses need to take seems almost cost prohibitive, but for people it's really not so bad.
Microbiome research has skyrocketed in the last few years alongside a new interest in tight junctions and extracellular matrix health. People are combining the two to see what effects microbiome metabolites have on tight junctions and extracellular matrix health. If you put butyrate and tight junctions into a search engine, you get some interesting results. Glyphosate, polysorbate 80, carrageenan and other stuff in our new processed food (and so much of our medication!) are known to disrupt the extracellular matrix and damage tight junctions. The idea behind Restore is that it protects against this damage in the same way that a healthy microbiome does.
People are doing enemas with Bravo, the probiotic yogurt, though I think most are consuming it orally. I have heard it described as the next best thing to a fecal transplant when done as an enema. I heard Ruggiero comment that he was surprised at how reluctant the British were to do enemas compared to other Europeans. Americans may be just as reluctant, but poor health in your family can change your thinking pretty quickly.
Posted by: Betty Bona | March 10, 2016 at 11:11 AM
Betty Bona;
Is that Restore that Dr. Zac Bush is talking about?
Is this an enema?
Posted by: Benedetta | March 09, 2016 at 06:11 PM
Oops, I went to order more of the product I mentioned, and I have the name wrong. It's Restore rather than Resolve. It's the product that hopefully restores the extracellular matrix of the gut lining and other membranes as well.
Posted by: Betty Bona | March 09, 2016 at 02:30 PM
All of these suggestions are great. I'll add my two cents when it comes to the microbiome which I think is a big factor in seizure disorders. One of the important functions of the microbiome is to shore up all of the membranes in our bodies and keep the extracellular matrix healthy (glyphosate and, to a lesser extent, gluten, disrupt the extracellular matrix). There's some interesting research on the roles of the metabolites of our commensal bacteria like butyrate relating to the extracellular matrix proteins. Butyrate has other roles as well, like encouraging appropriate cell differentiation. Other metabolites (I don't remember which, maybe butyrate) encourage unhealthy cells to use the full ATP cycle with the electron transport system rather than the anaerobic portion only using just glucose and netting only 2 ATP. Some metabolites discourage cell division only in cancer type cells. The microbiome is simply essential to our health. I like Linda1's suggestion of the human milk based probiotic. Bravo yogurt is also available in the US. It is colostrum (bovine, I think) fermented with whatever mammal milk is available (do it yourself). It supplies a great variety of good bacteria. Some are doing enemas of this yogurt which may somewhat mimic fecal transplants. I haven't tried this product myself, but hope to. Another thing to look at with respect to extracellular matrix is a product that consists of (I think) metabolites of soil bacteria. It's called Resolve (resolve4health.com). I think it's for real, but have not had enough time yet to evaluate. It's worth looking into anyway. I'm using it on my dog, with good success, but I am doing other things as well. And I can now see that I need to avoid anything with carrageenan, polysorbate 80, sodium lauryl sulfate, or anything else that damages the membranes. Those things are in food and medications and in topical products. You have to look for them because they turn up where we least expect them. Alternative milks almost always have carrageenan. Why would we consume a product that breaks down membranes? Dr. Ruggiero has a product coming out called Rerum. It's somehow based on metabolites of good bacteria, but don't know how. I'm looking forward to hearing more about it.
One more thing to look at is from the veterinarian world. Dr. Plechner has identified a syndrome that results in many chronic conditions for animals including seizures. He calls it Atypical Cortisol-Estrogen Imbalance Syndrome. Pet foods are allowed so much more glyphosate residue than human food, they have huge amounts of aluminum, and lots of carrageenan and other nasties. It's informative reading.
Finally, what do we really know about microcrystaline cellulose? The inactive ingredients in so many drugs and over the counter meds have potential for causing all sorts of harm. I know better than to believe they are safe just because they say so.
We're all just struggling through the best we can and learning as we go. I hope you find some answers to get Ronan healthy.
Posted by: Betty Bona | March 07, 2016 at 12:39 PM
Cathy-I cried when I read your article as my son also has had many grand mal and petit mal seizures. He is taking the generic form of Keppra (leviterecetum) and has been seizure free for about five years. You have a wonderful family and they remind me of my son's older brother who feels the same way about his brother with autism and his history of seizures. God Bless you and your beautiful children! Jeff's question above states "is experimentation with different types of medical marijuana an option"? The answer is it has to be legalized in your particular state for use as a medical agent for seizure disorders. Some states have legalized it for medical use and you need to check with your state department of health to find out if your state is one of them.
Posted by: Gayle | March 07, 2016 at 12:07 PM
Regarding alpha lipoic acid, I received the info from Quicksilver Scientific that there are two types of lipoic acid- R and S. The alpha lipoic contains both, but they prefer to give their clients R lipoic acid, because R is the active form and the S form might occupy receptor sites, preventing the active form from being effective. Quicksilver Scientific has also developed a "Liposomal Vitamin B " product, which is supposed to be more effective than the sublingual form. My impression is that all people with chronic neurologic problems should be taking an effective form of B. In people who have gut inflammation, absorption of vit B through the gut may not be possible- therefore you need to use liposomal or sublingual or injectables. by the way, people who successfully treat their Alzheimers symptoms, seem to be using vitamin B. ( Along with vitamin B, fish oil with mercury removed or krill oil should be taken)
Posted by: Cherry Misra | March 07, 2016 at 11:55 AM
Messed up on the below post:
Even if they come off the meds, and go two years with (OUT) meds with no seizures -
Posted by: Benedetta | March 07, 2016 at 10:42 AM
Well, we have had about every kind of seizure there is.
*Febrile seizures - coming with a fever. the typical on the floor, jerking arms and legs
*Roaming around endlessly through the rooms while tugging on the bottom of his tee shirt.
*Running down to find us and then sitting down, biting the edges of his tongue, small tiny jerks almost shivers.
* Starring in the class room, as the teacher wonders if it is seizures or day dreaming. She decided it was absentee seizures.
*No sign of a seizures, except to suddenly the patient finds himself a bit wet, for urinating a bit.
* Myclonic jerks; fully conscious; but the muscles contract suddenly (jerk) like they have received an electric shock.
* Falling down, unconscious, arms and hands jerking, biting tongue..
If the medicines stop the seizures and there is not seizures for a long while, the protocol is to give another EEG..
Just because an EEG is clear does not mean there is no seizure activity. Because of that; the give an EEG at the hospital for a week. In reality; we are now talking adults most times, and insurance covers little, so it will probably be coming early in the morning and staying just overnight for an EEG.
So we are talking about outgrowing seizures.
What is the types of seizures that the success rate of outgrowing them All of them - except the myclonic jerks.
Some reason that is life long. So, they say.
WE have been on this or that diet for a really long time.
We are scared about coming off the meds. because it takes a bite out of life, like driving and school and work.
Even if they come off the meds, and go two years with meds with no seizures -- only 78 percent continue on in their life with no seizures, I would have like a higher percentage.
Posted by: Benedetta | March 07, 2016 at 10:38 AM
I'm sorry,I meant to post my SIDS/vaccines rant in the notes on the upper right. Here all I wanted to say, is these children are beautiful and seem so dear..so sweet and kind.Each a wonderful gift!
Posted by: barbaraj | March 07, 2016 at 09:36 AM
My niece recently showed marked improvement in her speech/gait with a short steroid course that was prescribed for an allergic skin rash. She has an "abnormal eeg", but not classified seizure disorder.She has an appointment to see neurologist who also treats a lot of PANS/PANDAS. I'm wondering, is it possible some seizure disorders benefit from immunomodulating therapy? Not sure if covered by insurance for this indication, but I'm guessing it might be for refractory seizures. It is listed as 'non-antiepileptic drug therapy' in Dr Frye's article on TACA site. Biomed tx she benefited most from were omega 3 fatty acid supplementation and gf/cf diet.
Posted by: dnj3forever | March 07, 2016 at 07:38 AM
There are many FB groups devoted to pediatric cannabis therapy where you can learn a lot about the various components of marijuana. Beware, some CBD supplements are not what they claim to be or have impurity/quality problems. Dosing is not simple, and the ratios of CBD to THC, as well as THCA, are highly individual. There are doctors who specialize in this treatment.
Posted by: noteworthy | March 07, 2016 at 05:05 AM
72 hours!!! I don't know about the "average" child, but I do know about mine, my neighbors'and my sisters' children who have all experienced seizures following vaccines. The baby of my one friend,seizures on day thirty following flu vaccines twice* , another on day ten following mmr, many any time within three or four weeks, BUT on the CDC form given to victims families and caregivers asks ..did the child receive a vaccine within 72 hours. This imo is a deliberate avoidance of the facts surrounding vaccines and seizures.
http://www.cdc.gov/sids/pdf/suidi-reporting-form.pdf
Posted by: barbaraj | March 07, 2016 at 03:39 AM
Coconut oil is actually good for the microbiome. Coconut oil has anti-microbial properties (anti-fungal, anti-viral, anti-bacterial, anti-parasitic). It also helps increase nutrient absorption.
Posted by: Carolyn M | March 06, 2016 at 09:39 PM
This is my fight song
TAKE BACK MY LIFE SONG!!!
Ms Jameson You are the most Brilliant, Amazing, and Stongest person in the world!!!
Thank You , Thank You, Thank You!!!!!!!!!!!!!
Ronan is the Best of us all!!! And THANK YOU BOTH!!!!!!!!!!!!!!!!!!
Posted by: Annie | March 06, 2016 at 08:35 PM
Linda1,
"my thought is to look into the EMF exposures in your home. EMF and radio frequency radiation are known to affect our cells."
Good idea. I have appended a few relevant articles from Pubmed. Undoubtedly, EMF combined with other toxic stimuli as summarized in my eBook would be far more of a contributing factor. Or, even other combinations of toxic stimuli without EMF. I haven't examined seizures or autism in particular, but with other neural diseases I have examined (such as AD), there appear to hundreds of potential toxic stimuli.
50 years ago in the Journal of Pediatrics: light-induced seizures.
("Fifty years later, we are still intrigued by reflex seizures. In addition to light stimuli, we have identified new and unexpected triggers including music, hot water, and provocative tasks such as decision-making, card games, and even Legos. The circuits and cellular mechanisms underlying this broad category of seizures still remain to be discovered.")
Autism and EMF? Plausibility of a pathophysiological link - Part I.
Autism and EMF? Plausibility of a pathophysiological link part II.
"Txt"-induced seizures indicating reading epilepsy in the mobile phone age.
("We report a 44-year-old woman with difficulty using the text message function of her mobile phone with a long background of unrecognised reading-induced seizures.")
A study of neurotoxic biomarkers, c-fos and GFAP after acute exposure to GSM radiation at 900 MHz in the picrotoxin model of rat brains.
("Our results reveal that c-fos and glial markers were triggered by the combined stress of non-thermal irradiation and the toxic effect of picrotoxin on cerebral tissues")
Experimental induction of intermale aggressive behavior in limbic epileptic rats by weak, complex magnetic fields: Implications for geomagnetic activity and the modern habitat?
("The results suggest that group aggression can be increased or decreased as a function of the temporal characteristics and morphology (shape) of the applied magnetic field.")
Posted by: Ronald Kostoff | March 06, 2016 at 08:23 PM
Just seconding the post I just read about ElectroMagneticFrequencies in the home
www.electricsense.com You can ask for help there and get suggestions And make sure your home doesn't have a smart meter type of meter. cell phones, all that kind of stuff may be affecting Ronan adversely.
Posted by: Sun~Rose | March 06, 2016 at 07:09 PM
There is a good Meryl Streep movie about this and success with the high fat diet for seizures. I also suggest contacting the Institutes for the Achievement of Human Potential in Philadelphia. They really know about the brain. And patterning might help Ronan in many positive ways. They are surely worth a try.
Bless You and your beautiful children.
Love,
Sun~Rose
[email protected]
p.s. I'd go for organic for him since so much of other food is genetically modified, and only the very best of oils, organic; and knowing how much God loves Ronan can help his healing.
Posted by: Sun~Rose | March 06, 2016 at 07:02 PM
Have you ever looked into homeopathy? It has been used to treat seizures as well as autism (Amy Lansky's book, Impossible Cure, gives a good overview of homeopathy, as well as going into how it helped her son's autism).
Finding a good, qualified homeopath is a must. There are some today who even specialize in autism spectrum disorders and they're getting good results. There's also something called CEASE Therapy, which uses homeopathy to treat autism (but it's a bit different from classical homeopathy, where typically only one remedy at a time is chosen and used for the patient).
I hope you find a treatment that works for your son!
Posted by: Sarah | March 06, 2016 at 06:23 PM
Hi Tim,
Re 3 T of coconut oil/day - I just heard this lecture (previously posted) where Donna Gates says that too much fat is bad for the microbiome? 3 T of fat seems like a lot, but I have no idea what's right.
Posted by: Linda1 | March 06, 2016 at 06:00 PM
I'm listening to the microbiome conference (I think tomorrow is the last day of 7), interview/lecture by Donna Gates, author of The Body Ecology Diet. She's talking about the different organisms in the microbiome and she just said at around the 30 minute mark that a German company is producing bioidentical human milk probiotics. I don't know what this might do for seizures, but, if dysbiosis is a part of the problem, I think this is definitely worth looking into. Traditional cultures used to use human milk to treat adult gastrointestinal illness (conjunctivitis in all age groups too).
http://microbiomemedicinesummit.com/donna-gates/
Posted by: Linda1 | March 06, 2016 at 05:57 PM
My son had seizures for years. He was on his anti seizure meds but would still have small seizures once a month. Going gluten free (again) helped these seizures become usually stare offs,not ones he would drop to the floor, but still occurred monthly. A little over a year ago he an episode that landed him in the hospital (Many bad seizures within hours) and they began using the generic for keppra, which you may have tried, but he has been good for going on 15 months. He is in his late teens so he maybe "growing out" of his seizures, but I don't think so. He continues his other meds, but adding levetiracetam the generic for keppra did right by him. I felt I had to share. Blessings to you and yours.
Posted by: NanNJ | March 06, 2016 at 05:38 PM
I forgot to add: give coconut oil in divided doses throughout the day, but do not give coconut oil within two hours of bedtime. It can cause substantial delay in getting to sleep.
Posted by: Carolyn Mses | March 06, 2016 at 04:49 PM
Cathy,
Consider a modified ketogenic diet. I have read that the ketogenic diet can help with seizures, and there are modified versions that may be easier to tolerate/manage than the classic ketogenic diet. The two of which I am aware include coconut oil as part of the diet. The relevant books are "The Coconut Oil & Low-Carb Solution" by Mary T. Newport, M.D., and "Stop Autism Now!" by Bruce Fife. The latter book has an endorsement by Russell Blaylock, M.D. on the back cover.
Also, if you add coconut oil to your son's diet start with a small amount and increase slowly. If too much is added at once, it can cause diarrhea.
Posted by: Carolyn M | March 06, 2016 at 04:13 PM
Lots of thoughts with you and your family Cathy. John
Posted by: John Stone | March 06, 2016 at 02:32 PM
One more option: Instead of restricting foods, many people have had wonderful success with digestive enzymes. I personally think that modifying diet is better/safer if possible, but when the enzymes work they are awesome. See Karen DeFelice’s book, Enzymes for Autism and Other Neurological Conditions, at http://www.amazon.com/Enzymes-Autism-Other-Neurological-Conditions-ebook/dp/B00BD63BJM/ref=sr_1_2?s=books&ie=UTF8&qid=1457292613&sr=1-2&keywords=karen+defelice — but all of her books are helpful and fascinating.
Posted by: Tim Lundeen | March 06, 2016 at 02:31 PM
Some suggestions for things that have helped other people.
(1) Minimize dietary glutamate and direct precursors. Seizures are caused by glutamate buildup in the brain per http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3741557/, and many autistic kids are helped by restricting glutamate.
(2) Do not ingest Aspartame, because of the many pathways by which it causes inflammation.
(3) Ketogenic diets (80% fat) help a lot of people, but I’m concerned about this as a long-term protocol. These diets are either excessively high protein or provide too little net glucose for gut and immune-system health (see the Jaminet’s Perfect Health Diet at http:// www.amazon.com/Perfect-Health-Diet-Regain-Weight/dp/1451699158/ref=sr_1_1? ie=UTF8&qid=1457288008&sr=8-1&keywords=perfect+health+diet).
Ketogenic diets require supplemental potassium and salt (see Volek & Phinney’s The Art and Science of Low Carbohydrate Living at http://www.amazon.com/Art-Science-Low- Carbohydrate-Living/dp/0983490708/ref=sr_1_1? s=books&ie=UTF8&qid=1457288748&sr=1-1&keywords=the+art+and+science+of+low +carbohydrate+living), but it can be difficult to manage supplements correctly without verbal feedback, and potassium supplements often cause gut distress.
Instead, my suggestion is to make sure you give at least 3T of coconut oil per day, because the short-chain fatty acids provide safe ketogenic nutrition for the brain/gut. One potential issue with coconut is that it is high in salicylates, which can cause inflammation in some people. So you could try something like Bulletproof’s MCT oil, http://www.bulletproof.com/ brain-octane-oil-32-oz. Another potential issue with coconut oil is mycotoxin contamination, and Bulletproof’s MCT oil should minimize this risk. Also, you don’t need as high a dose with MCT oil either, so should be easier to give. Ramp this up slowly to acclimatize the gut to it.
(4) Minimize dietary polyunsaturated fats (e.g. seed oils such as corn, soybean, canola, cottonseed). Polyunsaturated fats are highly inflammatory. Ideally have intake down in the 3%-of-calories range. Butter and coconut oils are great fats, with very low PUFA. You most likely will want to clarify the butter to remove milk proteins (melt it and skim off the foam, pour through a strainer into a bowl and refrigerate, skim off the bottom water/protein). We’ve found that even olive oil at 10% PUFA can be inflammatory.
(5) Minimize dietary methanol. This can metabolize into formaldehyde in the brain/gut and cause serious inflammation. Not hard to do: don’t eat any canned or bottled fruit or vegetables (fresh only, just-squeezed-by-you is ok, but boxed/bottled fruit juice is not). Also, if you eat tomatoes, make sure they are slow-simmered for at least an hour before consuming (they are high methanol, and canned/bottled tomatoes have even higher levels).
(6) Inflammation leading to glutamate buildup can be caused by autoimmune issues. You can minimize this by eliminating foods that are often tied to increased levels of autoimmune activity. Eliminate all grains except white rice, all dairy, all nuts, all nightshades, all dairy protein. (We find that peeled low-solanine potatoes are ok, as is clarified butter.) More information on this in Sarah Ballantyne’s book, The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body at http://www.amazon.com/Paleo-Approach-Reverse- Autoimmune-Disease/dp/1936608391/ref=sr_1_1? ie=UTF8&qid=1457289575&sr=8-1&keywords=sarah+ballantyne
(7) Minimize glyphosate contaminated food. Primarily avoid non-organic grains and sugar (but these aren’t recommended anyway for a number of reasons).
(8) Minimize processed foods. None of these are healthy and all promote inflammation, with the possible exception of coconut oil and clarified butter.
(9) Eat 100% grass-fed meats and pastured eggs. Factory-farmed meat/eggs are not healthy in a variety of ways.
(10) Minimize flame retardants, these disrupt hormonal balance. I think the most important is a flame-retardant-free mattress.
(11) Minimize EMFs, these can affect sensitive people.
(12) Frequent low-dose chelation for mercury and other heavy metals can be safe and effective. For information on diagnosis and treatment, see David Hammond’s book, Mercury Poisoning: The Undiagnosed Epidemic, at http://www.amazon.com/Mercury-Poisoning- Undiagnosed-David-Hammond/dp/1494747898/ref=sr_1_sc_1? ie=UTF8&qid=1457289816&sr=8-1-spell&keywords=david+hammon+mercury .
WARNING: using supplemental glutathione, NAC, ALA, or other mercury chelators on an intermittent basis is extremely dangerous for mercury-poisoned people, as is infrequent high-dose chelation, especially IV-based protocols. You can cause serious, permanent harm with any of these. The only safe protocol is frequent-low-dose-chelation, and even that requires awareness of how to minimize side-effects.
(13) Mycotoxin sensitivity (mold and food contamination) can cause inflammation and prevent healing in some people. For the environment, it suffices to keep relative humidity in the 40-50% range, which feels ok but prevents mold growth. Run a small dehumidifier in each bathroom after use. For food, avoid fermented foods and mushrooms; for supplements, avoid those produced by yeast/fermentation.
(14) Probiotics can help reduce gut inflammation, but the wrong ones will make things worse. It looks like fecal transplants are the very best option, if possible.
(15) If the seizures are due to mitochondrial dysfunction, then B vitamins and magnesium can help (along with the things above). There are various protocols for B vitamins: Sarah MyHill’s book, Diagnosing and treating Chronic Fatigue Syndrome: its mitochondria, not hypochondria, at http://www.amazon.com/Diagnosing-treating-Chronic-Fatigue-Syndrome/ dp/1781610347/ref=sr_1_1?s=books&ie=UTF8&qid=1457290707&sr=1-1&keywords=sarah +myhill ; Ben Lynch’s protocol at http://mthfr.net/mthfr-c677t-mutation-basic-protocol/ 2012/02/24/ ; or Freddd’s protocol at http://forums.phoenixrising.me/index.php?entries/a- guide-to-freddds-protocol.1618/ and http://forums.phoenixrising.me/index.php?attachments/ a-guide-to-freddds-protocol-pdf.9690/ .
There are a couple of herbs specific for supporting brain mitochondria: kudzu and motherwort. You can get tinctures from Green Dragon Botanicals, http:// greendragonbotanicals.com/. Motherwort makes you sleepy, so can be given at night to help sleep onset/quality. Both kudzu and motherwort are fairly estrogenic, so I don’t think should be used long-term, but could be helpful to get to a better place, then just used occasionally as needed.
(16) Herbs to reduce inflammation, there are a large number that can help. Good sources are any/all of Stephen Buhner’s books, especially his recent book, Healing Lyme (reducing inflammation is a key part of herbal treatment of Lyme). His herbal antibiotic and antiviral books also have good information for both chronic and acute illness. I like him because he has one foot in the scientific/research-based world, and one in the world of plant medicines: for me, all of his work is a real treat to read!
(17) It’s possible that low-dose naltrexone could help, by reducing gut-caused inflammation. Needs a prescription, must be ramped up slowly. Would try this last :-)
Posted by: Tim Lundeen | March 06, 2016 at 02:21 PM
Cathy,
I don't always comment, but I always read your Sunday posts and am always touched and inspired. I am so sorry for what your family is going through. Since it is something I'm aware of, my thought is to look into the EMF exposures in your home. EMF and radio frequency radiation are known to affect our cells. Some of us feel it and some don't. One thing you can do easily to reduce exposure would be to make sure you don't have a wireless land line in the house - the newer DECT phones are the worst - give off a lot of radiation the permeates the whole house. Just get an old fashioned plug into the wall phone. You can get a 25 foot cord so you don't feel restrained :o). Many people don't have land lines anymore, using only cell phones, but that is obviously a big exposure. Wi-fi is another thing that everyone accepts but is a definite exposure that some people can't tolerate and is not known to be safe. I think that the more medical exposures one has the more likely they are to be sensitive to wireless, and my hypothesis - individuals with heavy metal issues will also be more sensitive/intolerant. Ideally, a professional audit of your environment would be best. Also, I would investigate the EMF output of Ronan's assistive device (and any other electronic devices he uses) to see how his exposure can be minimized. It may be just a matter of his using it on a table or stand instead of in his lap, not putting it in his bed, carrying it around in a bag with a handle instead of in his arms close to his chest. You can hard wire all your computers.
Thinking of computers and devices, older screens used to trigger seizures in those susceptible. Is that true of the newer ones? Are some screens better than others in this regard?
Maybe keeping a food journal would reveal a link between a certain food and seizures? I remember reading that sage can trigger seizures. Some recipes do call for a lot of sage.
Hope some of this helps.
Posted by: Linda1 | March 06, 2016 at 01:05 PM
Omg this is so sweet. You have created some sweet children. I wish I had advice to offer but I only have tears and prayers.
Posted by: Twyla | March 06, 2016 at 12:14 PM
Hi Cathy, my heart goes out to you and your family. So hard to watch a child have seizures and not know how to help. We have not had to deal with that here, but I did grow up with a friend who had seizures.
Not trying to give medical advice, not a doctor, and am pretty sure you have probably researched all this stuff already, but sometimes there is something else out there, so was doing some reading for you; TACA has a list of some of the more uncommon treatments and disorders that can cause seizures and "cerebral folate deficiency" seems to be one fairly "new" cause. Seems that some people cannot metabolize the typical synthetic form of folic acid, and it can result in seizures. These people need treatment with a different form of it. Kids with the MTHFR gene have problems in some of the metabolism of these things. And it seems MTHFR mutations are more common in people who have autism..
This article describes very severe cases, but there are other cases described on the web of milder symptoms and seizures being treated
http://www.ncbi.nlm.nih.gov/pubmed/15581159
It seems that it is identified from low levels in the spinal fluid, not in the blood.
http://www.generationrescue.org/assets/Published-Science/frye-autism-folate-receptor-autoantibodies-simplified-2011.pdf
You have probably already looked at this, but as the treatment is so simple, if you haven't, I wonder if your doctor is able to treat/advise on a good dosage without the spinal tap?
I take folinic acid supplements just because our family hase the MTHFR mutation, and we try to avoid synthetic folic acid.
Again no idea if this is helpful or not, just wanted to let you know I am praying for Ronan, and hope that somewhere the answer comes for you guys.
Posted by: Hera | March 06, 2016 at 11:20 AM
Is experimentation with different types of medical marijuana an option?
Posted by: Jeff | March 06, 2016 at 08:02 AM